|Flat feet aged 5|
|The day my Hickman Line was put in|
Since then I’ve had an ileostomy (stoma bag) formed, a suprapubic catheter put in, diagnosis’ of spinal degeneration and Osteoporosis and am awaiting surgery for a Urostomy (stoma bag for urine), on the waiting list for spinal injections, will be having a heart monitor for a few days and will be having a small bowel MRI as my bowel is backing up and I have to have my stomach on to drain 24/7. I am mostly bed bound, I cannot walk at all, and have a wheelchair with a special recline function so I can lay myself down when my blood pressure drops. I have to have IV medication as I have no absorption, if not they have to be injected or dissolve and absorb through the gums (buccal). I am connected to my pump 24 hours a day between my TPN and IV medication. My mum has to do all of my IVs as I am not strong enough and my grip is too poor. I get terrible headaches, I live in severe pain, I sleep a lot now and my concentration is poor. I can only sit up for a few hours on a good day, which is extremely limiting. My quality of life is severely restricted.
Here are a few photos showing how my EDS manifests itself